My son Kayden was born at 26 weeks in the back of an ambulance near Oxford. We spent the first two-and-a-half years of his life in three hospitals, miles from our home in Merthyr. Then the doctors told me there was nothing more they could do for him.
Now Kayden’s nearly five. He’s cheeky, he’s so intelligent it shocks you and he’s determined. No matter what life throws at him he just gets on with it. It doesn’t faze him. He’s a miracle. So we don’t look into the future, we take it one day at a time.
Kayden needs 24-hour care. His hydrocephalus is the big concern because it can kill him in an hour – if he deteriorates I need to get him straight into hospital, to the neurological unit in Cardiff.
It’s been so hard – financially, emotionally, everything you could think of. My life stopped the day I had Kayden. I’m his nurse 24/7. But he’s also made a positive change because he’s made me look at life so differently. Before I had him, I was so selfish – brand new car, new clothes – and now everything revolves around Kayden.
When I first went to Tŷ Hafan I was horrified because I didn’t understand why a nurse was following me everywhere. I didn’t realise what was involved – they’re there to look after your child while you have a break! Kayden doesn’t sleep because he gets night terrors. One night he had been up all night and I said to the nurses ‘I need to go to bed, I’m not going to be any good for him today’ and they took over which was fantastic.
Now I know I’m safe to leave Kayden with them. When I walk in there now I can say ‘will you watch him? I’m going for a shower’ or ‘I’m going out shopping’ and I can put my faith in them. And Kayden’s happy there, he loves playtime and messy play and meeting new people. He clicked with on little boy and that made my day – I was crying because he played football with him; he can’t even walk but he was on the floor kicking the football and thoroughly enjoyed it. It was absolutely amazing – he didn’t even want to come home.
All the staff are fabulous; I enjoy being around them. You can even have a chat with them, they’re like your friends.
I’d tell someone going through the same thing not to be afraid to ask for help. I was and that’s why it got so bad, because I wasn’t coping and I blanked it and went into denial I suppose.
But you have to be open to anything they offer you because Tŷ Hafan is amazing.